9th Annual “Hope on the Hill” Congressional Dinner Featured Dr. Francis Collins, National Institutes of Health (NIH)

The 9th Annual “Hope on the Hill” Congressional Dinner was held on Tuesday, December 3, 2019 at The Willard Hotel in Washington, DC. More than 180 people from the SMA community – including families, government officials, and industry partners – attended the dinner, which raised $195,000 to fund advocacy efforts, research, and family support services. Since 2011, the “Hope on the Hill” Congressional Dinner has raised more than $1.4M for Cure SMA.

The evening included remarks from event co-chairs, Greg and Shannon Zerzan, Cure SMA President, Kenneth Hobby, and keynote speaker, Dr. Francis Collins, Director of the National Institutes of Health (NIH). Dr. Collins discussed the amazing progress in SMA research and his hope for future treatments and continued investment in research. Dr. Collins’ complete remarks can be found on the Cure SMA YouTube page.

We were also pleased to have Rep. Greg Walden (Oregon), Rep. Fred Upton (Michigan), Rep. Cathy McMorris Rodgers (Washington), and Rep. Dr. Michael Burgess (Texas) join us for the event. Each spoke about the importance of the bipartisan 21st Century Cures Act, signed into law in 2016, and its role in helping to accelerate research for treatments and cures for rare diseases, such as SMA.

Cure SMA remains focused on educating and engaging all groups in our community: families affected by SMA, governmental and regulatory groups, insurance and payers, and the biotech and pharmaceutical companies that are developing and testing SMA treatments. For more information about our advocacy efforts please visit, www.curesma.org/advocacy.

A special thanks to the sponsors who have made this event possible:

Discovery Sponsors







Genentech, a member of the Roche Group, logo






New Direction Sponsors

Benefactor Sponsors


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